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INFORMATION ON STROKE Patient
and Family Guide to Stroke Recovery: A brochure from the federal government
For your convenience the following brochure
may be read on line, save it to your computer, or print it out. Source: U.S. Dept. of Health and Human Services, Public Health Service, Agency
for Health Care Policy and Research. Recovering After a Stroke: Patient and Family
Guide. Consumer Version Clinical Practice Guideline, number 16, AHCPR Publication
number 95-0664. May 1995.
Post-Stroke
Rehabilitation Patient and Family Guide
Recovering After a Stroke
What Is a Stroke?
A stroke is a type of brain injury. Symptoms depend on the
part of the brain that is affected. People who survive a stroke often have weakness on one
side of the body or trouble with moving, talking or thinking.
Most strokes are ischemic (is-KEE-mic) strokes. These are
caused by reduced blood flow to the brain when blood vessels are blocked by a clot or
become too narrow for blood to get through. Brain cells in the area die from lack of
oxygen. In another type of stroke, called hemorrhagic (hem-or-JA-ic) stroke, the blood
vessel isn’t blocked; it bursts, and the blood leaks into the brain, causing damage.
Strokes are more common in older people. Almost
three-fourths of all strokes occur in people 65 years of age or over. However, a person of
any age can have a stroke.
A person may also have a transient ischemic attack (TIA).
This has the same symptoms as a stroke, but only lasts for a few hours or a day and does
not cause permanent brain damage. A TIA is not a stroke but it is an important warning
signal. The person needs treatment to help prevent an actual stroke in the future.
A stroke may be frightening to both the patient and family.
It helps to remember that stroke survivors usually have at least some spontaneous recovery
or natural healing and often recover further with rehabilitation.
For sale by the U.S. Government Printing Office
Superintendent of Documents, Mail Stop: SSOP, Washington, DC 20402-9328 ISBN 0-16-045565-0
Recovering After a Stroke: Purpose
of This Booklet
This booklet is about stroke rehabilitation. Its goal is to
help the person who has had a stroke achieve the best possible recovery. Its purpose is to
help people who have had strokes and their families get the most out of rehabilitation.
Note that this booklet sometimes uses the terms
"stroke survivor" and the "person" instead of "patient" to
refer to someone who has had a stroke. This is because people who have had a stroke are
patients for only a short time, first in the acute care hospital and then perhaps in a
rehabilitation program. For the rest of their lives, they are people who happen to have
had a stroke. The booklet also uses the word "family" to include those people
who are closest to the stroke survivor, whether or not they are relatives.
Contents
Rehabilitation works best when stroke survivors and their
families work together as a team. For this reason, both stroke survivors and family
members are encouraged to read all parts of the booklet.
Recovering From Stroke
The process of recovering from a stroke usually includes
treatment, spontaneous recovery, rehabilitation, and the return to community living.
Because stroke survivors often have complex rehabilitation needs, progress and recovery
are different for each person.
Treatment for stroke begins in a hospital with "acute
care." This first step includes helping the patient survive, preventing another
stroke, and taking care of any other medical problems.
Spontaneous recovery happens naturally to most people. Soon
after the stroke, some abilities that have been lost usually start to come back. This
process is quickest during the first few weeks, but it sometimes continues for a long
time.
Rehabilitation is another part of treatment. It helps the
person keep abilities and again back lost abilities to become more independent. It usually
begins while the patient is still in acute care. For many patients, it continues
afterward, either as a formal rehabilitation program or as individual services.
Many decisions about rehabilitation are made by the patient, family, and hospital staff
before discharge from acute care.
The last stage in stroke recovery begins with the
person’s return to community living after acute care or rehabilitation. This stage
can last for a lifetime as the stroke survivor and family learn to live with the effects
of the stroke. This may include doing common tasks in new ways or making up for damage to
or limits of one part of the body by greater activity of another. For example, a stroke
survivor can wear shoes with velcro closures instead of laces or may learn to write with
the opposite hand.
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How Stroke Affects People
Effects on the Body, Mind, and Feelings
Each stroke is different depending on the part of the brain
injured, how bad the injury is, and the person’s general health. Some of the effects
of stroke are:
Weakness (hemiparesis– hem-ee-par-EE-sis) or paralysis
(hemiplegia-hem-ee-PLEE-ja) on one side of the body. This may affect the whole side or
just the arm or the leg. The weakness or paralysis is on the side of the body opposite the
side of the brain injured by the stroke. For example, if the stroke injured the left side
of the brain, the weakness or paralysis will be on the right side of the body.
Problems with balance or coordination. These can make it
hard for the person to sit, stand, or walk, even if muscles are strong enough.
Problems using language (aphasis and dysarthria). A person
with aphasia (a-FAY-zha) may have trouble understanding speech or writing. Or, the person
may understand but may not be able to think of the words to speak or write. A person with
dysarthria (dis-AR-three-a) knows the right words but has trouble saying them clearly.
Being unaware of or ignoring things on one side of the body
(bodily neglect or inattention). Often, the person will not turn to look toward the weaker
side or even eat food from the half of the plate on that side.
Pain, numbness, or odd sensations. These can make it hard
for the person to relax and feel comfortable.
Problems with memory, thinking, attention, or learning
(cognitive problems). A person may have trouble with many mental activities or just a few.
For example, the person may have trouble following directions, may get confused if
something in a room is moved, or may not be able to keep track of the date or time.
Being unaware of the effects of the stroke. The person may
show poor judgment by trying to do things that are unsafe as a result of the stroke.
Trouble swallowing (dysphagia - dis-FAY-ja). This can make
it hard for the person to get enough food. Also, care must sometimes be taken to prevent
the person from breathing in food (aspiration - as-per-AY-shun) while trying to swallow
it.
Problems with bowel or bladder control. These problems can
be helped with the use of portable urinals, bedpans, and other toileting devices.
Getting tired very quickly. Becoming tired very quickly may
limit the person’s participation and performance in a rehabilitation program.
Sudden bursts of emotion, such as laughing, crying, or
anger. These emotions may indicate that a person needs help, understanding, and support in
adjusting to the effects of the stroke.
Depression. This is common in people who have had strokes.
It can begin soon after the stroke or many weeks later, and family members often notice it
first.
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Depression After Stroke
It is normal for a stroke survivor to feel sad over the
problems caused by stroke. However, some people experience a major depressive disorder,
which should be diagnosed and treated as soon as possible. A person with a major
depressive disorder has a number of symptoms nearly every day, all day, for at least 2
weeks. These always include at least one of the following:
-
Feeling sad, blue, or down in the dumps.
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Loss of interest in things that the person used to enjoy.
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A person may also have other physical or psychological
symptoms, including:
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Feeling slowed down or restless and unable to sit still.
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Feeling worthless or guilty.
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Increase or decrease in appetite or weight.
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Problems concentrating, thinking, remembering, or making
decisions.
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Trouble sleeping or sleeping too much.
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Loss of energy or feeling tired all of the time.
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Headaches.
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Other aches and pains.
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Digestive problems.
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Sexual problems.
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Feeling pessimistic or hopeless.
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Being anxious or worried.
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Thoughts of death or suicide.
If a stroke survivor has symptoms of depression, especially
thoughts of death or suicide, professional help is needed right away. Once the
depression is properly treated, these thoughts will go away. Depression can be treated
with medication, psychotherapy, or both. If it is not treated, it can cause needless
suffering and also makes it harder to recover from the stroke.
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Disabilities After Stroke
A "disability" is difficulty doing something that
is a normal part of daily life. People who have had a stroke may have trouble with many
activities that were easy before, such as walking, talking, and taking care of
"activities of daily living" (ADLs). These include basic tasks such as bathing,
dressing, eating, and using the toilet, as well as more complex tasks called
"instrumental activities of daily living" (IADLs), such as housekeeping, using
the telephone, driving, and writing checks.
Some disabilities are obvious right after the stroke.
Others may not be noticed until the person is back home and is trying to do something for
the first time since the stroke.
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What Happens During Acute Care
The main purposes of acute care are to:
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Make sure the patient’s condition is caused by a stroke
and not by some other medical problem.
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Determine the type and location of the stroke and how
serious it is.
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Prevent or treat complications such as bowel or bladder
problems or pressure ulcers (bed sores).
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Prevent another stroke.
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Stroke survivors and family members may find the hospital
experience confusing. Hospital staff are there to help, and it is important to ask
questions and talk about concerns.
-
Encourage the patient to move and perform self-care tasks,
such as eating and getting out of bed, as early as medically possible. This is the first
step in rehabilitation.
-
Before acute care ends, the patient and family with the
hospital staff decide what the next step will be. For many patients, the next step will be
to continue rehabilitation.
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Preventing Another
Stroke
People who have had a stroke have an increased risk of
another stroke, especially during the first year after the original stroke. The risk of
another stroke goes up with older age, high blood pressure (hypertension), high
cholesterol, diabetes, obesity, having had a transient ischemic attack (TIA), heart
disease, cigarette smoking, heavy alcohol use, and drug abuse. While some risk factors for
stroke (such as age) cannot be changed, the risk factors for the others can be reduced
through use of medicines or changes in lifestyle.
Patients and families should ask for guidance from their
doctor or nurse about preventing another stroke. They need to work together to make
healthy changes in the patient’s lifestyle. Patients and families should also learn
the warning signs of a TIA (such as weakness on one side of the body and slurred speech)
and see a doctor immediately if these happen.
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Deciding About
Rehabilitation
Some people do not need rehabilitation after a stroke
because the stroke was mild or they have fully recovered. Others may be too disabled to
participate. However, many patients can be helped by rehabilitation. Hospital staff will
help the patient and family decide about rehabilitation and choose the right services or
program.
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Types of Rehabilitation
Programs
There are several kinds of rehabilitation programs:
Hospital programs. These programs can be provided by
special rehabilitation hospitals or by rehabilitation units in acute care hospitals.
Complete rehabilitation services are available. The patient stays in the hospital during
rehabilitation. An organized team of specially trained professionals provides the therapy.
Hospital programs are usually more intense than other programs and require more effort
from the patient.
Nursing facility (nursing home) programs. As in hospital
programs, the person stays at the facility during rehabilitation. Nursing facility
programs are very different from each other, so it is important to get specific
information about each one. Some provide a complete range of rehabilitation services;
others provide only limited services.
Outpatient programs. Outpatient programs allow a patient
who lives at home to get a full range of services by visiting a hospital outpatient
department, outpatient rehabilitation facility, or day hospital program.
Home-based programs. The patient can live at home and
receive rehabilitation services from visiting professionals. An important advantage of
home programs is that patients learn skills in the same place where they will use them.
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Individual Rehabilitation
Services
Many stroke survivors do not need a complete range of
rehabilitation services. Instead, they may need an individual type of service, such as
regular physical therapy or speech therapy. These services are available from outpatient
and home care programs.
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Paying for
Rehabilitation
Medicare and many health insurance policies will help pay
for rehabilitation. Medicare is the Federal health insurance program for Americans 65
years of age or over and for certain Americans with disabilities. It has two parts:
hospital insurance (known as Part A) and supplementary medical insurance (known as Part
B). Part A helps pay for home health care, hospice care, inpatient hospital care, and
inpatient care in a skilled nursing facility. Part B helps pay for doctors’ services,
outpatient hospital services, durable medical equipment, and a number of other medical
services and supplies not covered by Part A. Social Security Administration offices across
the country take applications for Medicare and provide general information about the
program.
In some cases, Medicare will help pay for outpatient
services from a Medicare-participating comprehensive outpatient rehabilitation facility.
Covered services include physicians’ services; physical, speech, occupational, and
respiratory therapies; counseling; and other related services. A stroke survivor must be
referred by a physician who certifies that skilled rehabilitation services are needed.
Medicaid is a Federal program that is operated by the
States, and each State decides who is eligible and the scope of health services offered.
Medicaid provides health care coverage for some low-income people who cannot afford it.
This includes people who are eligible because they are older, blind, or disabled, or
certain people in families with dependent children.
These programs have certain restrictions and limitations,
and coverage may stop as soon as the patient stops making progress. Therefore, it is
important for patients and families to find out exactly what their insurance will cover.
The hospital’s social service department can answer questions about insurance
coverage and can help with financial planning.
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Choosing a Rehabilitation
Program
The doctor and other hospital staff will provide
information and advice about rehabilitation programs, but the patient and family make the
final choice. Hospital staff know the patient’s disabilities and medical condition.
They should also be familiar with the rehabilitation programs in the community and should
be able to answer questions about them. The patient and family may have a preference about
whether the patient lives at home or at a rehabilitation facility. They may have reasons
for preferring one program over another. Their concerns are important and should be
discussed with hospital staff.
Things To Consider When Choosing a Rehabilitation
Program
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Does the program provide the services the patient needs?
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Does it match the patient’s abilities or is it too
demanding or not demanding enough?
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What kind of standing does it have in the community for the
quality of the program?
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Is it certified and does its staff have good credentials?
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Is it located where family members can easily visit?
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Does it actively involve the patient and family members in
rehabilitation decisions?
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Does it encourage family members to participate in some
rehabilitation sessions and practice with the patient?
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How well are its costs covered by insurance or Medicare?
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If it is an outpatient or home program, is there someone
living at home who can provide care?
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If it is an outpatient program, is transportation available?
A person may start rehabilitation in one program and later
transfer to another. For example, some patients who get tired quickly may start out in a
less intense rehabilitation program. After they build up their strength, they are able to
transfer to a more intense program.
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When Rehabilitation Is Not
Recommended
Some families and patients may be disappointed if the
doctor does not recommend rehabilitation. However, a person may be unconscious or too
disabled to benefit. For example, a person who is unable to learn may be better helped by
maintenance care at home or in a nursing facility. A person who is, at first, too weak for
rehabilitation may benefit from a gradual recovery period at home or in a nursing
facility. This person can consider rehabilitation at a later time. It is important to
remember that:
Hospital staff are responsible for helping plan the best
way to care for the patient after discharge from acute care. They can also provide or
arrange for needed social services and family education.
This is not the only chance to participate in
rehabilitation. People who are too disabled at first may recover enough to enter
rehabilitation later.
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What Happens During
Rehabilitation
In hospital or nursing facility rehabilitation programs,
the patient may spend several hours a day in activities such as physical therapy,
occupational therapy, speech therapy, recreational therapy, group activities, and patient
and family education. It is important to maintain skills that help recovery. Part of the
time is spent relearning skills (such as walking and speaking) that the person had before
the stroke. Part of it is spent learning new ways to do things that can no longer be done
the old way (for example, using one hand for tasks that usually need both hands).
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Setting Rehabilitation
Goals
The goals of rehabilitation depend on the effects of the
stroke, what the patient was able to do before the stroke, and the patient’s wishes.
Working together, goals are set by the patient, family, and rehabilitation program staff.
Sometimes, a person may need to repeat steps in striving to reach goals.
If goals are too high, the patient will not be able to
reach them. If they are too low, the patient may not get all the services that would help.
If they do not match the patient’s interests, the patient may not want to work at
them. Therefore, it is important for goals to be realistic. To help achieve realistic
goals, the patient and family should tell program staff about things that the patient
wants to be able to do.
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Rehabilitation
Goals
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Being able to walk, at least with a walker or can, is a
realistic goal for most stroke survivors.
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Being able to take care of oneself with some special
equipment is a realistic goal for most.
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Being able to drive a car is a realistic goal for some
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Having a job can be a realistic goal for some people who
were working before the stroke. For some, the old job may not be possible but another job
or a volunteer activity may be.
-
Reaching treatment goals does not mean the end of recovery.
It just means that the stroke survivor and family are ready to continue recovery on their
own.
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Rehabilitation
Specialists
Because every stroke is different, treatment will be
different for each person. Rehabilitation is provided by several types of specially
trained professionals. A person may work with any or all of these:
Physician.
All patients in stroke rehabilitation have a physician in charge of their care. Several
kinds of doctors with rehabilitation experience may have this role. These include family
physicians and internists (primary care doctors), geriatricians (specialists in working
with older patients), neurologists (specialists in the brain and nervous system), and
physiatrists (specialists in physical medicine and rehabilitation).
Rehabilitation
nurse.
Rehabilitation nurses specialize in nursing care for people with disabilities. They
provide direct care, educate patients and families, and help the doctor to coordinate
care.
Physical
therapist.
Physical therapists evaluate and treat problems with moving, balance, and coordination.
They provide training and exercises to improve walking, getting in and out of bed or
chair, and moving around without losing balance. They teach family members how to help
with exercises for the patient and how to help the patient move or walk, if needed.
Occupational
therapist.
Occupational therapists provide exercises and practice to help patients do things they
could do before the stroke such as eating, bathing, dressing, writing, or cooking. The old
way of doing an activity sometimes is no longer possible, so the therapist teaches a new
technique.
Speech language
pathologist.
Speech-language pathologists help patients get back language skills and learn other ways
to communicate. Teaching families how to improve communication is very important.
Speech-language pathologists also work with patients who have swallowing problems
(dysphagia).
Social
worker.
Social workers help patients and families make decisions about rehabilitation and plan the
return to the home or a new living place. They help the family answer questions about
insurance and other financial issues and can arrange for a variety of support services.
They may also provide or arrange for patient and family counseling to help cope with any
emotional problems.
Psychologist.
Psychologists are concerned with the mental and emotional health of patients. They use
interviews and tests to identify and understand problems. They may also treat thinking or
memory problems or may provide advice to other professionals about patients with these
problems.
Therapeutic
recreational therapist. These therapists help patients return to activities that they
enjoyed before the stroke such as playing cards, gardening, bowling, or community
activities. Recreational therapy helps the rehabilitation process and encourages the
patient to practice skills.
Other
professionals.
Other professionals may also help with the patient’s treatment. An orthotist may make
special braces to support weak ankles and feet. A urologist may help with bladder
problems. Other physician specialists may help with medical or emotional problems.
Dietitians make sure that the patient has a healthy diet during rehabilitation. They also
educate the family about proper diet after the patient leaves the program. Vocational
counselors may help patients go back to work or school.
Rehabilitation professionals, the patient, and the family
are vitally important partners in rehabilitation. They must all work together for
rehabilitation to succeed.
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Rehabilitation
Team
In many programs, a special rehabilitation team with a team
leader is organized for each patient. The patient, family and rehabilitation professionals
are all members. The team has regular meetings to discuss the progress of treatment. Using
a team approach often helps everyone work together to meet goals.
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Getting the Most Out of
Rehabilitation
What the Patient Can Do
If you are a stroke survivor in rehabilitation, keep in
mind that you are the most important person in your treatment. You should have a major say
in decisions about your care. This is hard for many stroke patients. You may sometimes
feel tempted to sit back and let the program staff take charge. If you need extra time to
think or have trouble talking, you may find that others are going ahead and making
decisions without waiting. Try not to let this happen.
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Make sure others understand that you want to help make
decisions about your care.
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Bring your questions and concerns to program staff.
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State your wishes and opinions on matters that affect you.
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Speak up if you feel that anyone is "talking down"
to you; or, if people start talking about you as if you are not there.
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Remember that you have the right to see your medical
records.
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To be a partner in your care, you need to be well informed
about your treatment and how well you are doing. It may help to record important
information about your treatment and progress and write down any questions you have.
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If you have speech problems, making your wishes known is
hard. The speech-language pathologist can help you to communicate with other staff
members, and family members may also help to communicate your ideas and needs.
Most patients find that rehabilitation is hard work. They
need to maintain abilities at the same time they are working to regain abilities. It is
normal to feel tired an discouraged at times because things that used to be easy before
the stroke are now difficult. The important thing is to notice the progress you make and
take pride in each achievement.
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How the Family Can
Help
If you are a family member of a stroke survivor, here are
some things you can do:
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Support the patient's efforts to participate in
rehabilitation decisions.
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Visit and talk with the patient. You can relax together
while playing cards, watching television, listening to the radio, or playing a board game.
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If the patient has trouble communicating (aphasia), ask the
speech-language pathologist how you can help.
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Participate in education offered for stroke survivors and
their families. Learn as much as you can and how you can help.
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Ask to attend some of the rehabilitation sessions. This is a
good way to learn how rehabilitation works and how to help.
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Encourage and help the patient to practice skills learned in
rehabilitation.
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Make sure that the program staff suggests activities that
fit the patient’s needs and interests.
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Find out what the patient can do alone, what the patient can
do with help, and what the patient can’t do. Then avoid doing things for the patient
that the patient is able to do. Each time the patient does them, his or her ability and
confidence will grow.
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Take care of yourself by eating well, getting enough rest,
and taking time to do things that you enjoy.
To gain more control over the rehabilitation process, keep
important information where you can find it. One suggestion is to keep a notebook with the
patient.
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Discharge
Planning
Discharge planning begins early during rehabilitation. It
involves the patient, family, and rehabilitation staff. The purpose of discharge planning
is to help maintain the benefits of rehabilitation after the patient has been discharged
from the program. Patients are usually discharged from rehabilitation soon after their
goals have been reached.
Some of the things discharge planning can include are to:
-
Make sure that the stroke survivor has a safe place to live
after discharge.
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Decide what care, assistance, or special equipment will be
needed.
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Arrange for more rehabilitation services or for other
services in the home (such as visits by a home health aide).
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Choose the health care provider who will monitor the
person’s health and medical needs.
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Determine the caregivers who will work as a partner with the
patient to provide daily care and assistance at home, and teach them the skills they will
need.
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Help the stroke survivor explore employment opportunities,
volunteer activities, and driving a car (if able and interested).
Sample Pages for Patient Notebook
Rehabilitation goals:
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The name, phone number, and job of each person on the
program staff who works with the patient:
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Schedule of rehabilitation activities:
-
Treatment instructions:
-
The patient’s goals or planned activities for the week
(include check marks showing which plans have been carried out and which goals have been
reached):
-
Other things accomplished during each day (include small
steps in reaching goals):
-
Questions and concerns to talk about with the program staff:
-
Discuss any sexual concerns the stroke survivor or
husband/wife may have. Many people who have had strokes enjoy active sex lives.
Preparing a Living Place
Many stroke survivors can return to their own homes after
rehabilitation. Others need to live in a place with professional staff such as a nursing
home or assisted living facility. An assisted living facility can provide residential
living with a full range of services and staff. The choice usually depends on the
person’s needs for care and whether caregivers are available in the home. The stroke
survivor needs a living place that supports continuing recovery.
It is important to choose a living place that is safe. If
the person needs a new place to live, a social worker can help find the best place.
During discharge planning, program staff will ask about the
home and may also visit it. They may suggest changes to make it safer. These might include
changing rooms around so that a stroke survivor can stay on one floor, moving scatter rugs
or small pieces of furniture that could cause falls, and putting grab bars and seats in
tubs and showers.
It is a good idea for the stroke survivor to go home for a
trial visit before discharge. This will help identify problems that need to be discussed
or corrected before the patient returns.
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Deciding About Special Equipment
Even after rehabilitation, some stroke survivors have
trouble walking, balancing, or performing certain activities of daily living. Special
equipment can sometimes help. Here are some examples:
Cane. Many
people who have had strokes use a cane when walking. For people with balancing problems,
special canes with three or four "feet" are available.
Walker. A
walker provides more support than a cane. Several designs are available for people who can
only use one hand and for different problems with walking or balance.
Ankle-foot orthotic devices
(braces). Braces help a person to walk by keeping the ankle and foot in
the correct position and providing support for the knee.
Wheelchair.
Some people will need a wheelchair. Wheelchairs come in many different designs. They can
be customized to fit the user’s needs and abilities. Find out which features are most
important for the stroke survivor.
Aids for bathing,
dressing, and eating. Some of these are safety devices such as grab bars and nonskid
tub and floor mats. Others make it easier to do things with one hand. Examples are velcro
fasteners on clothes and placemats that won’t slide on the table.
Communication aids.
These range from small computers to homemade communication boards. The stroke survivor,
family, and rehabilitation program staff should decide together what special equipment is
needed. Program staff can help in making the best choices. Medicare or health insurance
will often help pay for the equipment.
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Preparing Caregivers
Caregivers who help stroke survivors at home are usually
family members such as a husband or wife or an adult son or daughter. They may also be
friends or even professional home health aides. Usually, one person is the main caregiver,
while others help from time to time. An important part of discharge planning is to make
sure that caregivers understand the safety, physical, and emotional needs of the stroke
survivor, and that they will be available to provide needed care.
Since every stroke is different, people have different
needs for help from caregivers. Here are some of the things caregivers may do:
-
Keep notes on discharge plans and instructions and ask about
anything that is not clear.
-
Help to make sure that the stroke survivor takes all
prescribed medicines and follows suggestions from program staff about diet, exercise,
rest, and other health practices.
-
Encourage and help the person to practice skills learned in
rehabilitation.
-
Help the person solve problems and discover new ways to do
things.
-
Help the person with activities performed before the stroke.
These could include using tools, buttoning a shirt, household tasks, and leisure or social
activities.
-
Help with personal care, if the person cannot manage alone.
-
Help with communication, if the person has speech problems.
Include the stroke survivor in conversations even when the person cannot actively
participate.
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Arrange for needed community services.
Stand up for the rights of the
stroke survivor
If you expect to be a caregiver, think carefully about this
role ahead of time. Are you prepared to work with the patient on stroke recovery? Talk it
over with other people who will share the caregiving job with you. What are the stroke
survivor’s needs? Who can best help meet each of them? Who will be the main
caregiver? Does caregiving need to be scheduled around the caregivers’ jobs or other
activities? There is time during discharge planning to talk with program staff about
caregiving and to develop a workable plan.
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Going Home
Adjusting to the Change
Going home to the old home or a new one is a big
adjustment. For the stroke survivor, it may be hard to transfer the skills learned during
rehabilitation to a new location. Also, more problems caused by the stroke may appear as
the person tries to go back to old activities. During this time, the stroke survivor and
family learn how the stroke will affect daily life and can make the necessary adjustments.
These adjustments are a physical and emotional challenge
for the main caregiver as well as the stroke survivor. The caregiver has many new
responsibilities and may not have time for some favorite activities. The caregiver needs
support, understanding, and some time to rest. Caregiving that falls too heavily on one
person can be very stressful. Even when family members and friends are nearby and willing
to help, conflicts over caregiving can cause stress.
A stroke is always stressful for the family, but it is
especially hard if one family member is the only caregiver. Much time may be required to
meet the needs of the stroke survivor. Therefore, the caregiver needs as much support as
possible from others. Working together eases the stress on everyone.
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Tips for Reducing Stress
The following tips for reducing stress are for both
caregivers and stroke survivors.
-
Take stroke recovery and caregiving one day at a time and be
hopeful.
-
Remember that adjusting to the effects of stroke takes time.
Appreciate each small gain as you discover better ways of doing things.
-
Caregiving is learned. Expect that knowledge and skills will
grow with experience.
-
Experiment. Until you find what works for you, try new ways
of doing activities of daily living, communicating with each other, scheduling the day,
and organizing your social life.
-
Plan for "breaks" so that you are not togther all
the time. This is a good way for family and friends to help on occasion. You can also plan
activities that get both of you out of the house.
-
Ask family members and friends to help in specific ways and
commit to certain times to help. This gives others a chance to help in useful ways.
-
Read about the experiences of other people in similar
situations. Your public library has life stories by people who have had a stroke as well
as books for caregivers.
-
Join or start a support group for stroke survivors or
caregivers. You can work on problems together and develop new friendships.
-
Be kind to each other. If you sometimes feel irritated, this
is natural and you don’t need to blame yourself. But don’t "take it
out" on the other person. It often helps to talk about these feelings with a friend,
rehabilitation professional, or support group.
-
Plan and enjoy new experiences and don’t look back.
Avoid comparing life as it is now with how it was before the stroke.
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Follow-up Appointments
After a stroke survivor returns to the community, regular
follow-up appointments are usually scheduled with the doctor and sometimes with
rehabilitation professionals. The purpose of follow-up is to check on the stroke
survivor’s medical condition and ability to use the skills learned in rehabilitation.
It is also important to check on how well the stroke survivor and family are adjusting.
The stroke survivor and caregiver can be prepared for these visits with a list of
questions or concerns.
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Where To Get Help
Many kinds of help are available for people who have had
strokes and their families and caregivers. Some of the most important are:
Information about stroke. A good place to start is with the
books and pamphlets available from national organizations that provide information on this
subject. Many of their materials are available free of charge. A list of these
organizations starts on page 30.
Local stroke clubs or other support groups. These are
groups where stroke survivors and family members can share their experiences, help each
other solve problems, and expand their social lives.
Home health services. These are available from the Visiting
Nurses Association (VNA), public health departments, hospital home care departments, and
private home health agencies. Services may include nursing care, rehabilitation therapies,
personal care (for example, help with bathing or dressing), respite care (staying with the
stroke survivor so that the caregiver can take a vacation or short break), homemaker
services, and other kinds of help.
Meals on Wheels. Hot meals are delivered to the homes of
people who cannot easily shop and cook.
Adult day care. People who cannot be completely independent
sometimes spend the day at an adult day care center. There they get meals, participate in
social activities, and may also get some health care and rehabilitation services.
Friendly Visitor (or other companion services). A paid or
volunteer companion makes regular visits or phone calls to a person with disabilities.
Transportation services. Most public transportation systems
have buses that a person in a wheelchair can board. Some organizations and communities
provide vans to take wheelchair users and others on errands such as shopping or
doctor’s visits.
Many communities have service organizations that can help.
Some free services may be available or fees may be on a "sliding scale" based on
income. It takes some work to find out what services and payment arrangements are
available. A good way to start is to ask the social workers in the hospital or
rehabilitation program where the stroke survivor was treated. Also, talk to the local
United Way or places of worship. Another good place to look is the Yellow Pages of the
telephone book, under "Health Services," "Home Health Care,"
"Senior Citizen Services," or "Social Service Organizations." Just
asking friends may turn up useful information. The more you ask, the more you will learn.
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Additional Resources
ACTION
1100 Vermont Avenue, NW
Washington, DC 20525
(202) 606-4855 (call for telephone number of regional office)
Sponsors older American volunteer programs.
Administration on Aging
330 Independence Avenue, SW
Washington, DC 20201
Toll-free (800) 677-1116 (call for list of community services for older Americans in your
area)
AHA Stroke Connection
(formerly the Courage Stroke Network)
American Heart Association
7272 Greenville Avenue
Dallas, TX 75231
Toll-free (800) 553-6321 (or check telephone book for local AHA office)
Provides prevention, diagnosis, treatment, and
rehabilitation information to stroke survivors and their families.
American Dietetic Association/National Center for Nutrition
and Dietetics
216 West Jackson Boulevard
Chicago, IL 60606
Toll-free (800) 366-1655
(Consumer Nutrition Hotline)
Consumers may speak to a registered dietitian for answers
to nutrition questions, or obtain a referral to a local registered dietitian.
American Self-Help Clearinghouse
St. Clares-Riverside Medical Center
Denville, NJ 07834
(201) 625-7101 (call for name and telephone number of State or local clearinghouse)
Provides information and assistance on local self-help
groups.
National Aphasia Association
P.O. Box 1887
Murray Hill Station
New York, NY 10156
Toll-free (800) 922-4622
Provides information on the partial or total loss of the
ability to speak or comprehend speech, resulting from a stroke or other causes.
National Easter Seal Society
230 West Monroe Street, Suite 1800
Chicago, IL 60606
(312) 726-6200 (or check telephone book for local Easter Seal Society)
Provides information and services to help people with
disabilities.
National Stroke Association
8480 East Orchard Road, Suite 1000
Englewood, CO 80111
(303) 771-1700
Toll-free (800) STROKES (787-6537)
Serves as an information referral clearinghouse on stroke.
Offers guidance on forming stroke support groups and clubs.
Rosalynn Carter Institute
Georgia Southwestern College
600 Simmons Street
Americus, GA 31709
Provides information on caregiving. Reading lists, video
products, and other caregiver resources are available by writing to the address listed
above.
Stroke Clubs International
805 12th Street
Galveston, TX 77550
(409) 762-1022 (call for the name of a stroke club located in your area)
Maintains list of over 800 stroke clubs throughout the
United States.
The Well Spouse Foundation
P.O. Box 801
New York, NY 10023
(212) 724-7209
Toll-free (800) 838-0879
Provides support for the husbands, wives, and partners of
people who are chronically ill or disabled.
Medicare Information
Consumer Information Center
Department 59
Pueblo, CO 81009
By writing to this address, you can receive a free copy of The
Medicare Handbook (updated and published annually). This handbook provides information
about Medicare benefits, health insurance to supplement Medicare, and limits to Medicare
coverage. It is also available in Spanish.
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For Further Information
Information in this booklet is based on Post-Stroke
Rehabilitation. Clinical Practice Guideline, Number 16. It was developed by a
non-Federal panel sponsored by the Agency for Health Care Policy and Research (AHCPR), an
agency of Public Health Service. Other guidelines on common health problems are available,
and more are being developed.
Four other patient guides are available from AHCPR that may
be of interest to stroke survivors and their caregivers:
-
Preventing Pressure Ulcers: Patient Guide gives detailed
information about how to prevent pressure sores (AHCPR Publication No. 92-0048).
-
Treating Pressure Sores: Patient Guide gives detailed
information about treating pressure sores (AHCPR Publication No. 95-0654).
-
Urinary Incontinence in Adults: Patient Guide describes why
people lose urine when they don’t want to and how that can be treated (AHCPR
Publication NO. 92-0040).
-
Depression Is a Treatable Illness: Patient Guide discusses
major depressive disorder, which most often can be successfully treated with the help of a
health professional (AHCPR Publication No. 93-0053).
For more information about these and other guidelines,
or to get more copies of this booklet, call toll-free: 1-800-358-9295
or write to:
Agency for Health Care Policy and Research
Publications Clearinghouse
P.O. Box 8547
Silver Spring, MD 20907
U.S. Department of Health and Human Services
Public Health Service
Agency for Health Care Policy and Research
Executive Office Center, Suite 501
2101 East Jefferson Street
Rockville, MD 20852
AHCPR Publication No. 95-0664
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May 1995
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